Several other individuals and agencies were contacted for key informant interviews, but were unavailable: Wake Forest Baptist Health Cancer Center’s Cancer Patient Support Program, Greater Cleveland Avenue Christian Church (a predominately African American church), and Tres Fordham, Executive Director of the Yadkin Family YMCA in Yadkinville. Despite being unable to interview the YMCA Executive Director, attendance at the focus group for the LIVESTRONG at the Yadkin YMCA included the views of both Mr. Fordham and other individuals within the rural counties in Cancer Services’ service area. However, the absence of lengthier interviews with this community leader, as well as the Baptist Cancer Patient Support Program and an African-American church such as Greater Cleveland Avenue, presents
limitations for the needs assessment findings. These perspectives would be useful to integrate into further exploration of strengths and gaps in existing services for families facing cancer. CONCLUSIONS
Beyond the local context of Cancer Services, these findings have broad implications for maternal and child health research and practice. The Institute of Medicine’s call to identify the psychosocial needs of cancer patients and their children to connect them with needed services39 is an important step, but this initiative must be linked to both clinical practice and population- based survey data. The use of population-based data would increase reliable information about cancer survivors with children. Doing so could facilitate screening and referrals to help survivors manage the unique stressors of facing cancer as a parent. 1 Expanded awareness of the public health impact of cancer on families and children would help health organizations develop programs and partnerships to better target the needs of these families.
Using a strengths-based approach to build community capacity, future research should address both the characteristics of families who are at greatest risk for poor psychosocial outcomes associated with parental cancer, and those who are doing well. Understanding risk factors is important, but learning more about the characteristics, beliefs, and health behaviors of families and children who thrive in the face of parental cancer is also essential to planning interventions that enable resilience within the family of a parent with cancer. Longitudinal studies will help illuminate how these behaviors and beliefs evolve over time, and translational research will evaluate the effectiveness of program implementation in clinical practice settings.
Thoughtful development of research questions is also essential to understanding the impact of parental cancer on family and child health. Although the existing research base demonstrates the negative psychosocial, educational, and health effects of parental cancer on children, research questions specifically target these harmful effects. It is worth considering whether a research lens pathologizing children’s experience of parental cancer creates a self- fulfilling prophecy of finding further evidence of adverse outcomes. There may also be positive changes in children of parents with cancer, but the right research questions must be asked to identify these effects. Further study of the qualities that enable families to navigate cancer well— connection, positivity, adaptability, control, acceptance and resilience—will enable development of interventions that foster these strengths and help families face cancer successfully.
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Appendix A: Key Informant Interview Guide
1. Describe your professional role and the role of your agency within your community. Who do you serve? Are clients referred, mandated, or voluntary? For how long do you
typically work with clients (and how often do the same clients return for subsequent visits)?
2. Describe a typical interaction with a client. What kinds of things do you do or discuss together?
3. Based on your professional expertise, what are some of the most common challenges, fears, or concerns faced by cancer survivors and their families in the community you serve?
4. In your opinion, what does it mean to thrive or do well as a cancer survivor or the family member of a cancer survivor? What services do cancer survivors and families need to thrive? Do those services exist within the community? Who utilizes them? Are there barriers to access (and who experiences these barriers most often)?
5. What are some programs in the community that you think (based on your opinion and/or conversations with clients) are doing a good job helping adult cancer survivors and their children? What makes these programs successful?
6. What are some of the unmet needs of adult cancer survivors and/or their families? Is the community making efforts to meet these needs? What else could be done?
7. In your work with cancer survivors, what has been surprising to you? Why? 8. How could Cancer Services better meet the needs of parents with cancer and their
families? Are there existing programs that could be improved, or new programs that could be added? What else do you think would make a difference in the lives of these families?
Appendix B: Focus Group Guide
1. Describe what the time in the first several weeks following your/your partner’s cancer diagnosis has been like for you as a parent. As more time passed, what changed?
2. What resources did you need after your/your partner’s diagnosis to support yourself? • What made your life easier during this time?
• Have you found it most helpful to access resources through the internet, written/paper materials, someone to talk to (a professional, a friend, or a fellow survivor)—which resources have you used most to support yourself?
• Did you receive a CLIMB kit, and how was it helpful if so?
3. How have your needs for resources or support changed over the course of your/your partner’s diagnosis and treatment?
4. What do you think the time following your/your partner’s diagnosis and treatment was like for your child(ren)?
• Before cancer, describe how you and your child(ren) communicated.
• What kinds of changes or responses did you notice in them, in terms of behaviors, emotions, physical symptoms, or anything else?
5. What resources did you need after your/your partner’s diagnosis to support your kids? • What helped you make their lives easier during this time?
• Have you found it most helpful to access resources through the internet, written/paper materials, someone to talk to (a professional, a friend, or a fellow child of a survivor)— which resources have you used most to support your child(ren)?
6. What kinds of resources or support did your child(ren) need for themselves to cope with what was happening? (Distinction: things they did for themselves, not through you)
7. How have your children’s needs changed over the course of your/your partner’s diagnosis and treatment?
8. How well did you feel able to help meet your child(ren)’s needs? What, if anything, would have enabled you to be more helpful in meeting these needs?
9. Have you and/or your family participated in support or educational programs for cancer patients, survivors, caregivers, or families (either through Cancer Services or through the hospital, church, or other organizations in your community)? If so, how was your experience? 10. If there were programs that you and/or other members of your family wanted to attend but were unable to, what got in the way and kept you from being able to attend?
11. Were there other kinds of resources/programs/groups that you would have liked for yourself or your family but couldn’t find in your community (or online) during and after your cancer
treatment? If so, please describe the kind of program, resource, or group that you would have liked to find but couldn’t.
12. Do you have any suggestions for programs/services that Cancer Services could offer to families affected by cancer in the future? These could be programs for parents, caregivers, children, and/or whole families. Please describe any suggested programs/resources in as much detail as possible! (type of program, meeting day/time/location, etc.)
• Would you be interested in a program at the site where you/your partner receive treatment (where kids could tour the facility and meet the doctors/nurses/other staff)? Would this be helpful, or does it not matter that much?
Appendix C: Client Survey 1. Name 2. Age 3. Gender 4. City/Town 5. Cancer type
6. Date of your/your partner’s diagnosis
7. How old are your children? Please select all that apply.
8. When you/your partner were diagnosed, did you know other parents who had been diagnosed with cancer?
9. When you/your partner were diagnosed, did your child(ren) know other children whose parents had been diagnosed with cancer?
10. When did you first talk to your child(ren) about your/your partner’s diagnosis? • As soon as I found out
• After the treatment plan was decided • Right before treatment started
• When signs of illness became visible (hair loss, etc.) • When my child(ren) asked about it
• Other:
11. Where did you get resources to talk to your child(ren) about your/your partner’s diagnosis? What was helpful? What was not helpful?
12. What advice do you wish someone had given you about talking with your child(ren) about cancer?
13. Have you, your partner, or your children participated in any programs offered through Cancer Services? Please select all that apply.
• CLIMB • Families Group • Healing Hands • Patient Advocate • Support Group • Survivors Day • Wigs • Other:
14. Were these programs helpful and/or enjoyable? Why or why not?
15. Have you, your partner, or your children participated in any cancer-related programs offered through other organizations? If so, please describe.
16. If you or your family did not attend a program that you were interested in, why not? Please select all that apply.
• The program was at an inconvenient time • The program was at an inconvenient location • Cost of gas/driving to the program
• Lack of childcare • I was too tired • I was too busy
• My child(ren) didn’t want to attend
• I didn’t learn about the program until after it happened • Other:
17. If you were unable to find a program to meet your needs, what were you looking for? Please describe the kind of program, resource, or group that you would have liked to find.
18. How do you prefer to learn about resources, programs, or groups for cancer survivors and their families? Please select all that apply.
• Handouts or pamphlets • Internet search
• Email • Phone
• From my healthcare providers • Friends/word-of-mouth • Church/place of worship • Other:
19. What has the time following your/your partner’s diagnosis been like for you, as a parent? 20. What do you think the time following your/your partner’s diagnosis has been like for your children?
21. How would you describe your ability to meet your child(ren)’s needs following your/your partner’s diagnosis? • Poor • Fair • Good • Very Good • Excellent
22. Is there something that would have enabled you to be more successful in meeting your child(ren)’s needs following your/your partner’s diagnosis? Please describe.
23. Do you have any suggestions for resources, programs, or groups that Cancer Services could offer to families? These could be resources for parents, caregivers, children, and/or whole families. Please describe any suggested programs/resources in as much detail as possible! 24. Is there anything else that you would like to share about your family's journey through cancer? Your reflections and ideas will help us meet the needs of other families facing a cancer diagnosis, so we would love to hear anything that you think would be helpful for us to know!
Appendix D: Responses to Client Survey – What has the time since your/your partner’s diagnosis been like for you as a parent?
• “It was an eye opener, because I was always the caretaker in the family.” • “Extremely taxing emotionally and physically.”
• “Difficult financially… felt like a complete loser. My kid had to watch chemo, mastectomy, radiation, and the tears as my car got repossessed.”
• “Focused on health and lifestyle changes for myself and my child.”
• “I was very optimistic with my diagnosis… I was thinking only to get well and to be there for my kids.”
• “Very stressful and hard because they don’t understand how you feel and just want things to continue as usual.”
• “Very difficult—I want to see them growing.”
• “Day to day tasks difficult alone with three kids. My youngest is 3, oldest only 10. I was very active at school, PTA, etc. Kids miss me there.”
• “I am through treatment successfully and living a relatively normal life again.” • “Same, just a little more loved.”
• “Extremely difficult to maintain a household and support two children while facing cancer.”
• “Very hard. My six-year-old couldn’t understand that I was too tired to play. My older kids had a hard time the past two summers because of not being able to have any fun, since I haven’t worked since May 2011.”
• “Tough, low energy and patience, short-tempered at times.”
• “I prayed to God to help me through this. I wrote a journal every time I took chemo. When I lost all my hair I thought I would cry. But when it came out I saved it AND PUT IT IN A BAG!!! And thank God for life everyday. Because my hair will grow back and wouldn’t be able to get another life. My family has been right there for me every step of